Women’s experiences of participating in a prospective, longitudinal postpartum depression study: insights for perinatal mental health researchers

Abstract

Barriers to recruitment for research on mental illness include participant distrust of researchers and social stigma. Though these issues may be acutely important in perinatal mental health research, they remain unexplored in this context. In order to inform strategies to more fully engage women in perinatal mental health research, we explored the motivations and experiences of women with a history of major depressive disorder who participated in a prospective longitudinal research study on postpartum depression (PPD). Sixteen women with a history of depression who had either completed or recently made a decision about participation in a longitudinal research study about PPD were interviewed by telephone. Qualitative, semi-structured interviews explored participants' decision-making about, and experiences of, participation. Interviews were audio-recorded, transcribed, and qualitatively analyzed using elements of grounded theory methodology. Follow-up interviews were conducted with four participants to refine and clarify preliminary results. Foundational elements necessary for women to consider participating in PPD research included personal acceptance of illness and trust in the research team/institution. Other main motivators included perceived personal relevance, anticipated benefits (including access to support/resources, learning opportunities, and improved self-worth), altruism, and accessible study procedures. Our data suggest that participating in perinatal mental health research may help women make meaning of their mental illness experience and is perceived as providing support. The findings-particularly around the importance of participant-researcher rapport and accessibility of study design-may inform strategies that improve participation rates, decrease attrition, and maximize participant benefits in perinatal mental health research.

Prevalence and determinants of perinatal depression among labour migrant and refugee women on the Thai-Myanmar border: a cohort study

“…Overall, the percentage of participants who received treatment was small, at less than 10% of the total sample. But even amongst women who were not treated, the repeated SCID interviews in and of themselves may have had a therapeutic effect by providing women with an opportunity to talk about symptoms in an open manner to a healthcare professionalan opportunity which in this setting is rare [24]. Depression of any severity was more likely to persist over the course of the perinatal period than depression of moderate-severe severity.…”

“…Evidence consistently suggests that prevalence is higher in low-and middle-income countries (LMIC), with estimates ranging from 10. [8][9][10][11][12][13][14][15][16][17][18][19][20][21][22][23][24][25].3% in LMIC compared with 7.4-19.2% in high-income countries (HIC) [1,3,4]. Untreated perinatal depression has been associated with a number of significant adverse outcomes including negative health behaviours in pregnancy [1], subsequent chronic and recurrent depression [1,2], impaired ability to work and provide care, relationship breakdown [2,5] and suicidean important contributor to maternal deaths globally [6,7].…”

“…Working across different languages introduces a risk of misinterpretation and loss of meaning. Social desirability bias and stigma may have influenced women's disclosure of symptoms [24]. Due to resource constraints, some interviews were conducted by trained counsellors rather than a physician.…”

The Food, Feelings, and Family Study: Comparison of the efficacy of traditional methods, social media, and broadcast email to recruit pregnant women to an observational, longitudinal nutrition study.

“…Pregnant women report that they do not participate in research studies because they often lack interest in or distrust scienti c research [6,9,10], experience disapproval from friends and family [3,5], and feel as though they do not have time to participate [5,9]. On the other hand, pregnant women indicate they are motivated to participate when they receive personal bene ts, including the potential for improved pregnancy outcome [48,49], health education [50], and improvements to their own health [10,48]. Altruistic reasons, such as helping future patients [49] and contributing to knowledge, also spur participation in research studies [9,10,48,[50][51][52].…”

“…On the other hand, pregnant women indicate they are motivated to participate when they receive personal bene ts, including the potential for improved pregnancy outcome [48,49], health education [50], and improvements to their own health [10,48]. Altruistic reasons, such as helping future patients [49] and contributing to knowledge, also spur participation in research studies [9,10,48,[50][51][52]. For example, Daniels et al [51] found that 93% of pregnant women were motivated to participate in a study because they would contribute to science.…”